Joint Standing Committee on the
National Disability Insurance Agency
Children and Young People with Disability Australia
Submission – September 2018
INTRODUCTION
A range of issues regarding ICT and the National Disability Insurance Scheme (NDIS) have been consistently raised with Children and Young People with Disability Australia (CYDA) since the Scheme was established. Most of the feedback relates to the MyPlace Portal, however more broadly many find the NDIS website difficult to navigate, unintuitive and confusing.
Participants, families, nominees, service providers and others who access the MyPlace Portal have consistently found it problematic.
Given the NDIS MyPlace Portal is the primary way of accessing information, claiming payments and reimbursements, and managing other aspects of a person’s NDIS plan, this is of significant concern. It is also totally unacceptable that there are some instances where participants have not been able to access services or supports because of ICT inadequacies and failures. Further, the affording of ‘choice and control’, a fundamental objective of the Scheme, is greatly diminished for participants if information about their plan cannot be reliably accessed.
CHILDREN AND YOUNG PEOPLE WITH DISABILITY AUSTRALIA
CYDA is the national representative organisation for children and young people with disability, aged 0 to 25 years. The organisation is primarily funded through the Department of Social Services and is a not for profit organisation. CYDA has a national membership of 5300 and a growing social media presence with 22 500 followers across the three major platforms of Facebook, Twitter and LinkedIn.
CYDA provides a link between the direct experiences of children and young people with disability to federal government and other key stakeholders. This link is essential for the creation of a true appreciation of the experiences and challenges faced by children and young people with disability.
CYDA’s vision is that children and young people with disability living in Australia are afforded every opportunity to thrive, achieve their potential and that their rights and interests as individuals, members of a family and their community are met.
CYDA’s purpose is to advocate systemically at the national level for the rights and interests of all children and young people with disability living in Australia and it undertakes the following to achieve its purpose:
Listen and respond to the voices and experiences of children and young people with disability; Advocate for children and young people with disability for equal opportunities, participation and inclusion in the Australian community; Educate national public policy makers and the broader community about the experiences of children and young people with disability; Inform children and young people with disability, their families and care givers about their citizenship rights and entitlements; and Celebrate the successes and achievements of children and young people with disability.
Children and Young People with Disability Australia Page 2
LEGISLATION AND RIGHTS CONTEXT
Fundamental to the overall implementation and delivery of the NDIS is the commitment to ‘enable people with disability to exercise choice and control in the pursuit of their goals and the planning and delivery of services and supports’1.
The object and principles of the National Disability Insurance Scheme Act2 (the Act) also provide for obligations relating to the rights of people with disability and the provision of services and supports.
This includes:
Supporting the independence and social and economic participation of people with disability3; Providing reasonable and necessary supports, including early intervention supports4; Acknowledging and ensuring people with disability have the same right as other members of Australian society to be able to determine their own best interests, including the right to exercise choice and control, and to engage as equal partners in decisions that will affect their lives, to the full extent of their capacity5; and Promoting the provision of high quality and innovative supports that enable people with disability to maximise independent lifestyles and full inclusion in the community6.
A further object of the Act is to give effect to Australia’s obligations as a State Party to the Convention on the Rights of Persons with Disabilities7 (CRPD). This includes the obligation to uphold the right of people with disability to access, on an equal basis with others, services, information and communications, including information and communication technologies and systems8.
The legal obligation to ensure equal access to services and information, including online, is also set out in the Disability Discrimination Act9.
RESPONSES TO THE INQUIRY TERMS OF REFERENCE
a) participant and provider experiences of the MyPlace Portal
DIRECT EXPERIENCE
CYDA has received a range of feedback regarding the MyPlace Portal. The majority of feedback is from families of children with disability. Young people with disability have also shared their experiences. Overall the feedback is characterised by a range of concerns with most reporting that the Portal is unfriendly, time consuming and inaccessible.
1 National Disability Insurance Scheme Act 2013 (Cth), s. 3.1(e). 2 National Disability Insurance Scheme Act 2013 (Cth). 3 Ibid, s. 3.1(c). 4 Ibid, s.3.1(d). 5 Ibid, s. 4.1(8). 6 Ibid, s. 3.1(g). 7 United Nations General Assembly 2006, Convention on the Rights of Persons with Disabilities, https://bit.ly/1qmcT8Z; National Disability Insurance Scheme Act 2013 (Cth), s. 3.1(a). 8 United Nations General Assembly 2006, Convention on the Rights of Persons with Disabilities, Article 9(1), https://bit.ly/1qmcT8Z. 9 Disability Discrimination Act 1992 (Cth), s. 24.
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This is reflected in the following feedback from families and young people.
The portal in my words is useless. It should be more user friendly. When making a claim, the areas you are claiming should be the same as on your plan. When looking up a previous claim, you should not have to go through all your claims to the last one to find the last claim you made. It should be at the top and the claims you made three years ago should be at the bottom. You cannot print any previous claims out which you could do in the first portal I used.
There is no information about how to find what you want or how to do anything you want. There are no explanations of any of the terminology or what result you are going to end up with if you do change anything.
It doesn’t make sense – nothing is clear or what you expect – difficult to make sense of sections of the portal - it’s slow and it crashes regularly.
The MyPlace Portal is a joke. Completely inadequate and vey clumsy to use. The information in it should be better linked and easier to search. I should not have to trawl through hundreds of payments to find a particular one.
Different names are used for the same funding bucket in the paper plan, online plan and my portal claiming section. Simple things like this should be consistent.
Providers are listed by registered head office address so not by location or communities they service. So many people do not know what is out there for them.
The service booking is a nightmare, it is so difficult to navigate with too many steps and too many confusing options. A nightmare I tell you!
SPECIFIC CONCERNS
Specific aspects and functions of the MyPlace Portal have also been found to cause concern.
‘Find a Provider’ function
The ‘Find a Provider’ function is central to assisting NDIS participants finding and accessing appropriate services in their local area. CYDA has been advised by members that the utility of this function is undermined by the fact that providers are listed by head office location, rather than the areas they service. Consequently, a participant may not have access to a comprehensive list of locally available services.
‘Payment Requests’ function
One of the key issues raised with CYDA is the use of different categories and terminology for making claims compared to what is used on the participant’s plan. This makes the process of inputting a payment request additionally complex and confusing. Further, it is stated that finding information about past payments is a difficult and lengthy process. It can involve scrolling through hundreds of payments to find a specific claim.
Children and Young People with Disability Australia Page 4
Budget Information and Monitoring
The opportunity to monitor expenditure of funds is an important function of the MyPlace Portal. It allows participants to have oversight on how funding is being spent and assists planning for the future. Current information provided on the MyPlace Portal is not detailed enough for some participants and families.
This is reflected in the below experience:
[The MyPlace Portal] doesn’t break down where money is spent – I have to individually go through each payment to work out how much I have left for continence products and community support as they are grouped together as a lump sum on the portal, but obviously not interchangeable.
INFORMATION, TRAINING AND SUPPORT
A factor contributing to and compounding the difficulties associated with the MyPlace Portal is the lack of accessible information, training and support for participants and families.
CYDA believes that there is insufficient information and explanation to assist many users to understand terminology, navigate the portal and use the functions easily and effectively. This issue is clearly demonstrated in CYDA’s recent survey regarding NDIS ICT where the vast majority of respondents reported that they have not received any training or support in using the MyPlace Portal. Further, the majority of users informed CYDA that they did not know where assistance with IT issues could be obtained.
It is acknowledged that an NDIS MyPlace Participant Portal: Step by Step Guide 2018 is available however, CYDA could not locate an Easy English version of the guide. Further, feedback indicates that the availability of the guide is not well known. CYDA also notes the MyPlace Participant Portal: Step by Step Guide 2018 lists a phone number for people who require additional assistance. CYDA rang this number and were concerned that it was the general inquiries line and not IT specific, raising questions regarding the expertise of the people providing assistance through this service.
CYDA SURVEY
CYDA conducted a recent survey regarding NDIS ICT with young people and families as part of its consultation relevant to this inquiry. The below summary of survey results provides a recent snapshot of experiences which consistently describe the MyPlace Portal as unfriendly, confusing and difficult to access.
PARTICIPANTS 187
- IN WHAT CAPACITY ARE YOU COMPLETING THIS SURVEY?
PARTICIPANT RESPONSE RATE %
Young person with disability 2 Family member or care giver of a child or young person with disability 97 Other 1
Children and Young People with Disability Australia Page 5
- WHAT AGE IS THE CHILD OR YOUNG PERSON?
RESPONSE RATE %
AGE (YEARS)
0 -3 3 4 – 6 15 7 – 9 20 10 – 12 16 13 – 15 16 16 – 18 10 >18 6 No response provided 14
- WHAT IS THE CURRENT GENDER IDENTITY OF THE CHILD OR YOUNG PERSON?
GENDER RESPONSE RATE %
Male 54 Female 45 Genderqueer 1
- IS THE CHILD OR YOUNG PERSON OF ABORIGINAL OR TORRES STRAIT ISLANDER BACKGROUND?
RESPONSE RESPONSE RATE %
Yes, Aboriginal 7
Yes, Torres Strait Islander 1
No 92
- WHAT STATE OR TERRITORY DO YOU LINE IN?
STATE OR TERRITORY RESPONSE RATE %
ACT 2
NSW 32
NT .5
QLD 12
SA 13
TAS 7
VIC 33
WA .5
- WHAT TYPE OF AREA DO YOU LIVE IN?
AREA RESPONSE RATE %
Metropolitan 52 Regional 37 Rural 11
Children and Young People with Disability Australia Page 6
- WHICH CIRCUMSTANCES BEST APPLY TO THE CHILD OR YOUNG PERSON?
CIRCUMSTANCES RESPONSE RATE %
Funded NDIS participant 87 An NDIS plan has been approved but services 9 and supports are not yet being accessed Other 4
- HOW IS THE FUNDING FOR SUPPORT MANAGED UNDER THE CHILD OR YOUNG PERSON’S PLAN?
MANAGEMENT TYPE RESPONSE RATE %
Self-managed 42 Partially self-managed 17 Managed by a registered plan manager 19 Managed by the NDIA 19 Managed by a plan nominee 3
- HOW HAVE YOU FOUND USING THE MYPLACE PORTAL?
RESPONSE RESPONSE RATE %
Easy 19 Ok 53 Difficult 28
- HOW HAVE YOU FOUND USING THE ‘PAYMENT REQUEST’ FUNCTION ON THE MYPLACE PORTAL?
RESPONSE RESPONSE RATE %
Easy 23 Ok 26 Difficult 13 N/A 38
- HOW HAVE YOU FOUND USING THE ‘SERVICE BOOKING’ FUNCTION ON THE MYPLACE PORTAL?
RESPONSE RESPONSE RATE %
Easy 1 Ok 7 Difficult 21 N/A 71
Children and Young People with Disability Australia Page 7
- HOW HAVE YOU FOUND USING THE ‘INSTANT MESSAGE’ FUNCTION ON THE MYPLACE PORTAL?
RESPONSE RESPONSE RATE %
Easy 1 Ok 3 Difficult 12 N/A 84
- HOW HAVE YOU FOUND USING THE ‘UPLOAD DOCUMENT’ FUNCTION ON THE MYPLACE PORTAL?
RESPONSE RESPONSE RATE %
Easy 8 Ok 22 Difficult 20 N/A 50
- HOW HAVE YOU FOUND USING THE ‘LOCATE SERVICE PROVIDER’ FUNCTION ON THE MYPLACE PORTAL?
RESPONSE RESPONSE RATE %
Easy 5 Ok 19 Difficult 44 N/A 32
- HAVE ISSUES WITH MYGOV EVER IMPACTED ON YOUR USE OF THE MYPLACE PORTAL?
RESPONSE RESPONSE RATE %
No 62 Yes 38
- FROM YOUR EXPERIENCE, HAVE IT ISSUES EVER IMPACTED ON PLAN DEVELOPMENT?
RESPONSE RESPONSE RATE %
No 63 Yes 37
- FROM YOUR EXPERIENCE HAVE IT ISSUES EVER IMPACTED ON THE DELIVERY OF SERVICES AND SUPPORTS UNDER THE NDIS?
RESPONSE RESPONSE RATE %
No 66 Yes 34
Children and Young People with Disability Australia Page 8
- DID YOU RECEIVE ANY SUPPORT AND/OR TRAINING IN USING THE MYPLACE PORTAL?
RESPONSE RESPONSE RATE %
No 83 Yes 17
- DO YOU KNOW WHERE TO FIND HELP IF YOU NEED ASSISTANCE WITH THE MYPLACE PORTAL?
RESPONSE RESPONSE RATE %
No 71 Yes 29
- DO YOU KNOW WHO HAS ACCESS TO YOUR NDIS RECORDS?
RESPONSE RESPONSE RATE %
No 72 Yes 28
- DO YOU KNOW HOW TO REQUEST ADDITIONAL PRIVACY PROTECTIONS, ALSO KNOWN AS RESTRICTED ACCESS, FOR YOUR NDIS RECORD?
RESPONSE RESPONSE RATE %
No 89 Yes 11
RECOMMENDATIONS
It is CYDA’s view that a comprehensive review of the MyPlace Portal needs to be undertaken to enable the breadth of difficulties experienced by young people with disability, families and other users to be clearly articulated. It is critical that this includes consultation and engagement with people with disability.
Recommendation 1: A comprehensive review of the MyPlace Portal is undertaken.
Recommendation 2: Accessible training and information is available for users of the MyPlace Portal.
b) the impact of the role of other Government agencies on the ICT infrastructure Feedback received by CYDA indicates that difficulties experienced with MyGov can impact on the accessibility and use of the MyPlace Portal. Primarily this relates to the additional complications associated with the linking of the two systems and situations when MyGov has been down.
Related examples of direct experiences are below:
My only down-times are on the weekend when they are upgrading [MyGov]. As I work during the week, this is sometimes the only time I have to complete payment requests etc System is down all weekend not just during the night which is very inconvenient.
MyGov services have been down when I need to get access to the portal when with a service provider so I was unable to get them the information needed at the time.
Children and Young People with Disability Australia Page 9
Yes, some aspects need to be set up in MyGov which makes it even more complex to know what you are doing. The only way I worked it out was by seeking help.
Difficulties logging in to MyGov discourages more regular use of the Portal.
In the context of an already difficult platform, issues relating to MyGov add another layer of complexity and another barrier to accessibility.
c) the appropriateness of the MyPlace Portal and agency facing IT systems It is CYDA’s view that the ability to access information about plans and their implementation is crucial to upholding the fundamental objects and principles of the NDIS.
CYDA believes that addressing the barriers to accessibility identified in this submission will improve the appropriateness of the MyPlace Portal. However, there are some people for whom the Portal will never be an accessible or appropriate platform including people with low IT literacy, limited or no access to the internet, NDIS participants and others. Further consideration of alternative mechanisms and avenues is required to ensure people who are unable to use the MyPlace Portal can still access information.
Recommendation 3: Consideration is given to developing and implementing alternatives option for accessing information contained within the MyPlace Portal.
d) the impact of ICT infrastructure on the implementation of the NDIS CYDA is acutely aware there have been to date a number of systemic issues with ICT infrastructure which have had a significant impact on the implementation of the NDIS. Problems with the initial implementation of the MyPlace Portal that left some services and supports unpaid for weeks were widely publicised. CYDA was also informed that there were delays in the processing and approval of plans of children and young people as a result of IT issues during the same period. Further, CYDA regularly receives reports from young people and families regarding frustrations or concerns about ICT infrastructure on the implementation of the NDIS. Examples include locating information on the NDIS website or being locked out of plans for months due to IT “glitches”.
In the recent survey conducted by CYDA, 34 percent of young people and families stated that IT issues had impacted on the delivery of services and support and 37 percent said that IT issues had impacted on plan development. This finding indicates that there are ongoing issues with ICT.
Delays in the provision of services and supports have specific implications for children with disability which relate to the unique developmental and learning opportunities which occur throughout childhood. For example, early childhood is a well-established pivotal time for development and it is critical that children and families have timely access to expertise, services and supports during this time.
It is therefore critical that IT issues which impact the delivery of services and supports are avoided, and are resolved quickly.
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e) any other related matters
The Collection, Use and Disclosure of Personal Information
The NDIA currently collects a substantial amount of personal information about current and prospective participants. There are clear human rights obligations and legal requirements in relation to privacy which are of central consideration to the collection, use and disclosure of personal information.
Equally important is the development of a culture that is constantly mindful that very intimate and personal information is typically provided about a person when they come into contact with the NDIS. It is CYDA’s view that this should include clear information about how people’s information is used. People should also know who within and external to the NDIA has access to their information. It is a critical element of affording people dignity and respect. This is a critical consideration when considering the function and effectiveness of ICT infrastructure.
Feedback received by CYDA reveals that there is a lack of transparency regarding the collection, use and disclosure of personal information by the NDIA. For example, CYDA’s recent survey on NDIS ICT systems found that 72 percent of respondents did not know who had access to the child or young person’s NDIS records. Further, only 11 percent knew how to request additional privacy protections, or restricted access, for their NDIS records.
CYDA has consistently raised concerns regarding this lack of transparency and supports the development of information maps that inform participants and families where information is collected from, where it goes and how it is used.
Recommendation 4: Information maps are developed to ensure NDIS participants and families know how information is being collected, used and disclosed.
Communication with the NDIA
Issues relating to communication with the NDIA are frequently raised with CYDA as a serious concern for young people with disability and families. Common experiences include unreturned phone calls, different information provided by multiple NDIA officers in response to questions and lost documents.
To address these concerns, CYDA supports the inclusion of an interactions log on the MyPlace Portal. This would list all phone and electronic interaction with the NDIA. This information should be accessible by NDIS participants.
The inclusion of an interactions log on the MyPlace Portal would provide greater transparency and certainty for young people with disability and families in their interactions with the NDIA.
Recommendation 5: The MyPlace Portal include a log of all participant interactions with the NDIA.
NDIS Website
CYDA also takes this opportunity to reiterate concerns we have raised previously regarding the NDIS website. The current website is not intuitive and is difficult to navigate, making it inaccessible for many people with disability. Information provided on the website is often hard to locate and is difficult to understand due to the use of complex formats and bureaucratic and arcane language. In addition, CYDA is concerned that it appears that there is only a limited amount of information available in Easy English.
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ICT Impact on Self-Management Uptake
Choice and control for participants is at the very heart of the vision and intent of the NDIS. It is embedded in the human rights framework, legislation and philosophy of the Scheme. A critical mechanism for making control and choice a lived reality for people with disability is the ability to self-manage supports. The most recent NDIS Quarterly Report shows that only 11 percent of participants are self-managing and a further 11 percent are partly self-managed10.
Feedback received by CYDA demonstrates that a lack of information, confidence and support combined with the complexity and difficulties associated with using the MyPlace Portal is a causal factor dissuading people from transitioning or taking on self-management.
It is CYDA’s view that addressing issues with the MyPlace Portal are a critical component of efforts to increase the uptake in self-management.
CONCLUSION
A well-functioning and accessible ICT system is critical to the success of the NDIS. There are a range of systemic and individual issues of concern which clearly reflect that the system must improve. It is hoped that this inquiry will assist in creating an increased understanding of the breadth of these concerns and that comprehensive action occurs to resolve these problems.
CYDA thanks the Committee for the opportunity to provide feedback to the Inquiry into NDIS ICT Systems and can be contacted if you wish to further discuss any of the matters raised in this submission.
SUMMARY OF RECOMMENDATIONS
Recommendation 1: A comprehensive review of the MyPlace Portal is undertaken.
Recommendation 2: Accessible training and information is available for users of the MyPlace Portal.
Recommendation 3: Consideration is given to developing and implementing alternatives option for accessing information contained in the MyPlace Portal.
Recommendation 4: Information maps are developed to ensure NDIS participants and families know how information is being collected, used and disclosed.
Recommendation 5: The MyPlace Portal include a log of all participant interactions with the NDIA.
CONTACT
Stephanie Gotlib
Chief Executive Officer
10 National Disability Insurance Scheme 2018, COAG Disability Reform Council Quarterly Report: June 2018,
Australian Department of Human Services, Canberra, p 43.